PERCEIVED SOCIAL SUPPORT IN YOUNG ADULTS WITH
CANCER AND THE CAMP EXPERIENCE
by
Stacy Marie Handley
A thesis submitted in partial fulfillment
of the requirements for the degree
of
Master
of
Nursing
MONTANA STATE UNIVERSITY
Bozeman, Montana
June 2004
© COPYRIGHT
by
Stacy Marie Handley
2004
All Rights Reserved
ii
APPROVAL
of a thesis submitted by
Stacy Marie Handley
This thesis has been read by each member of the thesis committee and has been found to
be satisfactory regarding content, English usage, format citations, bibliographic style, and
consistency, and is ready for submission to the College of Graduate Studies.
Wade Hill
Approved for the Department of Nursing
Jean Ballantyne
Approved for the College of Graduate Studies
Bruce McLeod
iii
STATEMENT OF PERMISSION TO USE
In presenting this thesis in partial fulfillment of the requirements for a master’s
degree at Montana State University, I agree that the Library shall make it available to
borrowers under rules of the Library.
If I have indicated my intention to copyright this thesis by including a copyright
notice page, copying is allowable only for scholarly purposes, consistent with “fair use”
as prescribed in the U.S. Copyright Law. Requests for permission for extended quotation
from or reproduction of this thesis in whole or in parts may be granted only by the
copyright holder.
Stacy Marie Handley
iv
DEDICATION PAGE
I would like to dedicate my thesis to my husband, Mike, and my family for all of
their support and guidance without which I would not be where I am today. I would also
like to dedicate this to all children, adolescents, and young adults who have bravely faced
an illness that has taken so many. I especially would like to dedicate my thesis to the
memory of Sam, a young lady who was never without a smile or a joke while facing an
uncertain future.
v
ACKNOWLEDGEMENTS
I would like to acknowledge the staff and volunteers of Camp Mak-A-Dream in Gold
Creek, MT for their dedication to children, adolescents, young adults, and adults with
cancer. Without their assistance and support this study would not have been possible.
Thank you.
vi
TABLE OF CONTENTS
1. . INTRODUCTION AND OVERVIEW ................................................................1
Background ...........................................................................................................3
Research Question ................................................................................................4
2. REVIEW OF LITERATURE ...............................................................................5
Social Support Definition and Theory ..................................................................5
Categories of Defining Social Support .....................................................5
Defining Social Support on a Multifaceted Level ..................................12
Social Support Application and Measurement ...................................................12
Models of Social Support........................................................................12
Social Support Measurement ..................................................................14
Social Support and Stress........................................................................14
Social Support and Health ......................................................................17
Social Support and Illness.......................................................................18
Social Support and Chronic Illness.........................................................20
Social Support and Cancer......................................................................21
Social Support Development in Childhood and Adolescence ................25
Social Support Development in Children, Adolescents, and Young
Adults with Cancer .................................................................................27
Social Support and the Camp Experience...............................................32
3. METHODS .........................................................................................................37
Population and Sample .......................................................................................37
Setting .....................................................................................................37
Sampling Procedure ................................................................................38
Design .................................................................................................................38
Instrument ...........................................................................................................39
Procedures...........................................................................................................41
Treatment of Data ...............................................................................................42
MOS Social Support Survey...................................................................42
Definitions...........................................................................................................42
4. RESULTS ...........................................................................................................44
Sample Demographics ........................................................................................44
Test Effects of Camp Experience on Social Support..........................................47
5. DISCUSSION .....................................................................................................52
Study Limitations................................................................................................57
vii
TABLE OF CONTENTS - CONTINUED
Future Research ..................................................................................................57
Study Results and Previous Studies....................................................................58
Implications for Practice .....................................................................................58
Conclusion ..........................................................................................................59
REFERENCES ...............................................................................................................61
APPENDIX A.................................................................................................................67
Pre-Test Research Tool.......................................................................................68
Post-Test Research Tool .....................................................................................76
APPENDIX B .................................................................................................................84
APPENDIX C .................................................................................................................87
APPENDIX D.................................................................................................................90
APPENDIX E .................................................................................................................92
viii
LIST OF TABLES
Table
Page
1. Published Alpha Reliability Scores for MOS Social Support Survey .......................40
2. Alpha Reliability Analysis of MOS Social Support Survey......................................41
3. Definitions..................................................................................................................43
4. Age, Sex, Race and Educational Level of Sample.....................................................44
5. Marital Status, Living Arrangement, and City/Town Population of Sample ............45
6. Camp Attendance, Cancer Type, Treatment, and Support Group Attendance of
Sample........................................................................................................................46
7. Comparison of Pre-Test and Post-Test Means and Standard Deviations for MOS
Social Support Scores ...............................................................................................47
8. t-Tests Comparing Pre-Test and Post-Test Data on MOS Social Support Survey ....48
9. Comparison of Pre-Test and Post-Test Means and Standard Deviations for Participants
Reporting MOS Social Support Scores in Lower 50th Percentile .............................49
10. t-Test Comparing Pre-Test and Post-Test Data on MOS social Support Survey for
Participants Reporting MOS Social Support Scores in Lower 50th Percentile .........49
ix
ABSTRACT
During the years when a peer social support network should be formed, children
and adolescents with cancer are in hospitals and are surrounded by protective parents and
family. Literature suggests there are many benefits associated with formation of a social
support network including improvement of health status but few childhood cancer
survivors have had the opportunity to form these networks. The purpose of this study is
to determine if there is an increase in reports of social support after attending an oncology
camp. A non-random convenience sample of 18 to 25 year olds with a diagnosis of
cancer attending a weeklong oncology camp were selected to participate in the research.
Participants completed surveys containing the Medical Outcomes Study (MOS) Social
Support Survey, RAND 36-Item Health Survey Questionnaire 1.0, and qualitative
questions at the beginning and end of camp. Comparison of pre-camp and post-camp
mean scores on the MOS Social Support Survey were statistically significant for one
scale only, tangible support within a particularly vulnerable sub-sample of participants.
An increase in all means was observed when pre-camp and post-camp results were
compared. These results suggest that cancer camp may be an effective intervention for
establishing a social support network and benefit overall health and wellbeing. The
implications for nursing include implementation of interventions designed to increase
social networks of children, adolescents, and young adults with cancer as well as
encouraging camp attendance.
1
CHAPTER 1
INTRODUCTION
In 2001, 8,600 children under the age of 15 were diagnosed with cancer, and
1,500 died from this disease (National Cancer Institute (NCI), 2004). Cancer is the
leading cause of death by disease in young persons between the ages of one and 15 years
(NCI, 2004). The most common childhood cancers as reported by the National Childhood
Cancer Foundation (NCCF) include leukemia, brain tumors, lymphoma, soft tissue
sarcomas, bone tumors, and neuroblastomas (2003). Leukemia and cancers of the central
nervous system (CNS) including brain tumors accounted for more than half of all newly
diagnosed cases of cancer in 2001 (NCI, 2004).
The 5-year survival rate for all childhood cancers has steadily risen over the past
30 years according to the American Cancer Society (ACS) and the NCI. The NCI (2004)
estimates that in 1974-76 the 5-year survival rate for all childhood cancers was 55.7%
compared to a 5-year survival rate of 77.1% in 1992-1997. Some of the childhood
leukemia’s are reaching cure rates upward of 80% (ACS, 2002). Survivors and their
families face a range of physical and psychological challenges imposed by the disease,
and some will suffer its long-term effects for the rest of their lives (ACS, 2002). An
overall increase in the 5-year survival rate for childhood cancer resulted in reintegration
with healthy peers and the need to form a social network.
During the formidable time prior to entering adolescence, children with cancer
can be confined to hospitals and home, relating more with doctors and nurses than peers.
It is during this time of emotional growth and development that they begin to move out of
2
their family unit into forming social networks and support systems with peers. These
initial social networks and support systems form the foundation upon which later social
support systems will be established as the adolescent enters young adulthood.
The presence of a social support system has been shown to be beneficial to the
recipient on multiple levels including physical, emotional, and health. Berkman and
Syme (1979) demonstrated a correlation between higher mortality rates and low levels of
social support. Research further suggests that a social support system is beneficial in
buffering the stress associated with illness and life changing events thus helping the
recipient of the support better cope with problems (Bliese & Britt, 2001; Caldwell,
Pearson, & Chin, 1987; Cohen & Willis, 1985; DeVries, Glasper, & Detillion, 2003).
Many researchers especially in the areas of healthcare and psychology have
studied the benefits associated with social support. Of particular interest is the effect of
social support on persons already coping with an illness, especially a life threatening
illness such as cancer. Social support can bolster the recipient’s feelings of belonging
thus giving them strength on a psychological level. There is some evidence to suggest
that social support may also be beneficial in altering the disease process itself and
possibly amplifying the response of the immune system (Lutgendorf, Johnsen, Cooper,
Anderson, Sorosky, Buller, & Sood, 2002; Uchino, Cacioppo, & Kiecolt-Glaser, 1996;
DeVries, Glasper, & Detillon, 2003).
The ability to establish a social support system prior to diagnosis with a chronic
illness is advantageous. Children and adolescents diagnosed with a life threatening
disease have little time to comprehend their illness let alone navigate through the process
that is adolescence during which formation of social networks outside of the family
3
occurs. Cancer reaches far in wide in the life of the person diagnosed with it as well as
family members caring for and helping the person. It has been demonstrated that cancer
not only affects the physical but the psychological development of children and
adolescents grappling with this disease (Kazak & Meadows, 1989; Kliewer, 1997).
Milestones in social development may be delayed for the child with cancer while his or
her peer’s progress into the world of young adulthood.
As children and adolescents with a diagnosis of cancer move toward adolescence
and adulthood they may find it difficult to relate to healthy peers and desire contact with
someone else their age that is “going through what they’re going through.” Camp
experiences can fill that void for young adults struggling with growing up and cancer at
the same time. There is limited research available that examines the implications of
social support from peers with cancer in young adults. Furthermore there is even less
information available examining the relationship between a camp experience and social
support. The purpose of the current study is to examine the perception of social support
as experienced by young adults diagnosed with cancer before and after a weeklong camp
experience.
Background
In 1999 and 2000, the ACS gathered representatives from 30 national organizations
working in the area of childhood cancer to identify issues to be addressed to improve
outcomes for children, adolescents, and young adults with cancer as well as their families
(ACS, 2003). The National Action Plan for Childhood Cancer was formulated at this
conference, a key factor identified in the plan was establishment of evidence-based
methodology and definition of the required components of social support (ACS, 2003).
4
To date there is little evidence available to determine the significance of a camp
experience on perceptions of social support for young adults diagnosed with cancer. The
existing literature available presents a significant source of anecdotal stories suggesting a
positive affect on young adults both emotionally and physically after attending a camp
experience with others their age with cancer. There is little to no data demonstrating
quantification and evaluation of social support received during the camp experience.
Research Question
The research question to be addressed by this study is as follows: Is there a
significant difference in perceived social support before and after a week long camp
experience with other young adults diagnosed with cancer? The research hypothesis for
this study is: Attendance at a week long camp for young adults diagnosed with cancer
will increase perceived social support when pre-camp and post-camp means are
compared.
5
CHAPTER 2
REVIEW OF LITERATURE
Social Support Definition and Theory
Social support is a burdensome term. In the early 1980’s researchers were deep in
the initial examination of the concept of social support. The consensus of the time was a
definition that was both simplistic and concrete. Social support referred to an interaction,
person, or relationship (Veiel & Bauman, 1992). Over the last 20 years the concrete
definition evolved into a more abstract and complex explanation that encompassed more
than just interaction, person, or relationship. Today there is little agreement among
researchers and theoreticians in regards to an operational definition of social support.
However, there is some agreement in terms of characteristics that are found as a common
thread that is weaved through the multiple definitions apparent for social support. All of
the definitions imply some type of positive interaction or helpful behavior provided to a
person in need of support (Hupcey, 1998).
Categories of Defining Social Support
From the starting point of a common characteristic, further defining of social
support appears to fall into one of at least five categories of the following: 1) Type of
support provided 2) Recipients perceptions of support 3) Intentions or behaviors of the
provider 4) Reciprocal support and 5) Social networks (Hupcey, 1998).
Types of Support. The first of five categories proposed by Hupcey (1998) to
classify the types of definitions of social support is the type of support provided. The
6
type of support provided refers to the resources provided, what is actually given to the
person or persons. The support provided is tailored to the situation in which a person has
a perceived need. For instance, Sarason, Levine, Basham, and Sarason (1983) state that
examples of this include: psychotherapists try to provide their clients with acceptance
needed to pursue self-examination and soldiers develop strong mutually reinforcing
support with each other that contributes to their success and survival. The type of support
provided usually meets an emotional need of the recipient as demonstrated above. Cobb
(1976) states that social support can be instrumental where information is provided
leading a person to believe that they are cared for and loved, esteemed and valued, and/or
that they belong to a network of communication and mutual obligation. This information
serves to meet the needs of the survivor through a variety of means but mainly love and
belonging. Sarason et al (1983) furthers this notion by adding that social support
contributes to a positive adjustment and personal development. The type of support
provided involves an exchange between the provider and recipient. These authors do not
offer a concrete example of what the support is but note that it meets a need, thus the type
of support provided works to bolster adjustment and development. The type of support
provided is used to categorize definitions of support. Inherent in the type of support is a
source and recipient of such support. As previously mentioned the type of support is
dependent on the situation but also dependent upon the provider and the recipient. The
type of support can be physical or psychological but almost always meets an emotional
need of the recipient and often the provider. Defining social support as to its type offers
the researcher an opportunity to describe the support itself and briefly touch on the source
7
of the support and the recipient. The second category of definitions of social support is
the recipient’s perception of the support.
Recipient’s Perception of the Support. The second category of defining social
support is the recipient’s perception of the support. Procidano and Heller (1983) define
social support as the extent to which an individual believes that their need for support,
information, and feedback are fulfilled. There are many factors that impact the
recipient’s perception of support such as physical setting, attitudes, and actions of others,
the recipient’s attitude and actions, and the support provided.
Physical setting factors can greatly impact the recipient’s perception of support to
the extent that the recipient may not even be able to access the support needed or
intended for the recipient. Physical setting can impose barriers on the social support
provided thus limiting and/or prohibiting the person’s access to support. The result of
such barriers is a perception of not having social support and is usually deemed as a
negative situation by recipient and possibly provider as well. Physical setting factors can
include poor roads, lack of public transportation, bad weather, and poorly designed
buildings (Pearson, 1990).
Attitudes and actions of others influence the recipient’s perception of support as
well. How the provider offers the support needed or deemed necessary to the recipient is
as important as the support offered (Hupcey, 1998; Pearson, 1990).
Providers of support must first be able to appraise the situation and determine if
help is needed, what actions to take and in what manner (Hupcey, 1998). During the
appraisal and implementation of support attitudes and actions of the provider can greatly
alter the support provided. The provider may greatly underestimate the need, the type of
8
support, and the length of time necessary to meet the need. The provider may also make
assumptions in regards to the support and the recipient. The provider may assume that
the support may make the person feel worse and they may also assume what they think is
needed instead of what the recipient may actually need (Hupcey, 1998). Finally the
provider may become tired, stressed, and or burned out if the time needed extends beyond
their ability to provide the support (Hupcey, 1998). The end result of the above factors
can lead the recipient to perceive an unmet need and overall dissatisfaction.
The recipient’s attitudes and activities indubitably influence the perception of
support. Pearson (1990) identifies such factors as low self-esteem, fear, and suspicion of
others, fear of dependency, insensitivities of others, and a stigmatized status as personal
factors that can lead the recipient to perceive a lack of support. Other recipient factors
such as personality, social role, coping ability, independence, and history of supportive
actions can influence the potential availability of support and whether one request, needs,
or receives support (Hupcey, 1998).
Finally the support provided influences the individual’s perception of support.
The support provided must meet the need of the recipient in terms of the type, amount,
and length of time (Pearson, 1990). If any of the above factors is not met the recipient
may perceive the support as not meeting their needs. The recipient’s perception of the
support provided can determine whether or not the support is deemed as positive or
potentially negative. Defining support in terms of the recipient’s perception allows for
further investigation of the potential of the support both in a positive and negative way.
How the recipient perceives the support can also be influence by the intentions or
9
behaviors of the provider of the support. Hupcey (1998) suggests that the third category
of defining social support focuses on the intentions or behaviors of the provider.
Intentions or Behaviors of the Provider. The third category of social support
definitions refers to the intentions or behaviors of the provider. Shumaker and Brownell
(1984) offer the definition social support as an exchange of resources between two
individuals perceived by the provider or the recipient to be intended to enhance the well
being of the recipient. The provider may perceive an obligation to provide support, they
may feel a need to provide support so when they are in need they will receive support
(Hupcey, 1998). Many of the factors mentioned above in regards to the recipients
perception of the support play into the intentions and behaviors of the provider. Social
support can occur in a bi-directional manner thus the provider can also be a recipient at
the same time. The models of social support will be further discussed later in the chapter.
Further examination of the reciprocating nature of social support is further explored in
the fourth category of defining social support, reciprocal support.
Reciprocal Support. The fourth category of definition is reciprocal support. This
category refers to the exchange of resources between the provider and recipient (Hupcey,
1998). Definitions focused on reciprocal support center themselves on the action of
exchange. Simply put the actual giving, receiving, and exchange of support is commonly
referred to as the function of social support (Antonucci, 1985). This category of
definition takes into account the interactions that occur between the provider and the
recipient and views both parties perception of the interaction. Definitions in this category
not only view the recipient’s perception of support but also look at the actual support as
10
well as the perception of the provider of the support (Hupcey, 1998). Viewing the
perceptions of both parties involved in the exchange of support shows that there can be
an in congruence. Providers usually feel that they are giving more than recipients feel
they are receiving (Antonucci, 1985; Sarason, Sarason, & Pierce, 1990). This can lead to
dissatisfaction in both parties and the possibility of limiting or withdrawing the support
provided (Hupcey, 1998). Shumaker and Brownell (1984) note the importance of
reciprocity by stating that: “The value of the reciprocity model for social support derives
from its attention to factors that inhibit people’s willingness to seek and accept help. By
being sensitive to situations in which the norm of reciprocity is salient investigators can
assess whether people lack access to support or are unwilling to become indebted to
others.” (p. 15) The fear of becoming indebted to another can form a stressful
environment and further an individual’s reluctance to ask for needed help (Hupcey,
1998). Reciprocity can indicate a mutual exchange relationship in which the members are
interdependent upon support given and received. A reciprocal relationship can also incite
a degree of discomfort from some in that they do not feel that they will be able to return
the favor and do not want to be indebted to another. In the fifth category, definitions are
in terms of the social network or the environment in which the support occurs.
Social Networks. The last category of definitions is social networks. The social
network is the milieu in which the support occurs. The social network can refer to an
individual, group, or large community (Hupcey, 1998). The social network can be
viewed as an environment in which the stage for the exchange of support is set. The
social network also refers to the individuals within that provide and receive the support
11
taking into consideration the characteristics of both parties as well as the characteristics
of the environment and the support itself (Hupcey, 1998).
Characteristics of the recipient of the support are the properties of the individual
that influence the structure and function of the social network (Antonucci, 1985). The
properties unique to the recipient are influenced by the cultural and social roles as well as
their demographic including age, sex, and education (Antonucci, 1985; Cohen & Willis,
1985). The person’s requirements for support are determined by these properties and will
also influence their response to support received (Hupcey, 1998).
Characteristics of the provider are similar to that of the recipient but also include
an ability to appraise a situation (Hupcey, 1998). The provider of support must able to
assess a situation determine what they think is needed, how much is needed, and how to
give what is needed (Hupcey, 1998). The provider also must think beyond that situation
at hand and determine the aftermath of the support provided and what the lasting
implications may be (Shumaker & Brownell, 1984).
The environment and support are key components of the social network.
Although the size of the network would seem to be a key factor, there is little information
to support the notion that the bigger the environment the more support available (Sarason
et al, 1990). Hupcey (1998) states that many studies are based on the premise that the
number of individuals in the support network or presence of a particular person will
influence positive outcomes. This may not be the as the person in need of support may
be reluctant to ask for support (Hupcey, 1998; Sarason et al, 1990). Finally Cohen and
Willis (1985) suggest that there may be a threshold of support in which a increase in the
12
number of providers of support and/or the support provided does not result in a
proportionate increase in satisfaction or benefits associated with social support.
Defining Social Support on a Multifaceted Level
A multifaceted concept such as social support is problematic and isnot easy to
summarize into a single concise definition. Essential attributes of all definitions and to
the concept of social support is a provider, recipient, support, and an environment in
which the exchange can occur. Once these attributes are in place exchange of social
support can occur, how the exchange occurs is explained my models of social support.
SOCIAL SUPPORT APPLICATION AND MEASUREMENT
Models of Social Support
There are several proposed models for the exchange of social support as well as
proposed models of social support interactions (See Appendix D & E). The provider
recipient model suggests a flow of support from provider to recipient in which one
provider meets all needs of the recipient (Appendix D). The next model is the primarysecondary provider model (Appendix D). In this model a secondary providers assists the
primary provider in meeting the needs of the recipient. The final proposed model is the
multiple provider model (Appendix D). This model consists of several providers
involved in meeting the needs of the recipient.
Within the models of support various social support interactions can occur. In an
example of this particular situation, the recipient can provide direct reciprocal actions
toward the provider instantaneously or the exchange can occur at a later time or because
of past relationships with the provider, there is no need to reciprocate (Hupcey, 1998)
13
(Appendix E). Another social support interaction involves a chain reaction type of
support where the initial provider provides to a recipient and the recipient in turn
providers to a second person in need (Hupcey, 1998) (Appendix E). Support can also
occur in ways that may not be positive or meet needs of recipient and provider. For
instance, the provider can provide more support than is reciprocated while the reverse can
also occur in which the recipient provides more support than is received (Hupcey, 1998)
(Appendix E). The final two proposed models of social support interactions occur in a
way that neither the provider nor recipients needs are met. In the first of these models the
interaction between the provider and recipient is stressful even though behaviors may be
intended to be supportive (Hupcey, 1998) (Appendix E). The last of these proposed
models in which neither the provider nor the recipients needs are met suggests the
support provided is negative, perceived as negative, and/or the outcome is negative
(Hupcey, 1998) (Appendix E).
Support is to be perceived as a positive experience however it can also occur in a
negative way and thus the needs of all parties involved may or may not be realized or
met. Models can be used to understand social support in a more concrete way. Social
support is influenced by multiple variables and differs from person to person. To better
examine and understand social support as it pertains to individuals a need to measure its
presence is essential. Through increased exploration of the concepts of social support,
researchers are striving to provide information to further the understanding of social
support and its role in human beings.
14
Social Support Measurement
As the knowledge related to the concept of social support has grown, applying a
single simple definition has become more and more difficult. Even more cumbersome is
development of a means to concretely measure the presence and associated outcomes of
social support. There are many definitions for social support and even more means that
attempt to measure this broad concept. Similar in the way Hupcey (1998) proposed
categories of defining social support, Sarason et al (1990) have suggested three categories
in which the measures of social support may be divided, these categories are as follows:
a) the network model that focuses on the individuals social integration into a group and
the interconnectedness of those within the group b) the received support model that
focuses on what the person actually received or is reported to have received and c) the
perceived support model that focuses on support the person believes to be available if he
or she should need it. Of note there are few measures that address satisfactions with
support, reciprocity, actual recipient needs, or the negative aspects of support with social
interactions (Hupcey, 1998).
In assessing social support the many available tools attempt to address the
multidimensional nature of social support. From these tools valuable insight to the
perceived benefits of social support have been identified. One area of interest that is
repeated identified in literature is the effect of social support on stress and stressful
situations.
Social Support and Stress
The means in which social support affects stress and stressful situations is up to
debate. Researchers have questioned whether the effect is related to a buffering or
15
protective mechanism for a person under stress or in a stressful situation or if the effects
of social support have a beneficial effect irregardless of whether the persons are under
stress or not (Cohen & Willis, 1985).
Examination of social support as a main effect suggest a generalized beneficial
effect of social support could occur because large social networks provide persons with
regular positive experiences and a set of stable, socially rewarded roles in the community
(Cohen & Willis, 1985). In this situation the person is immersed in a positive and
somewhat predictable environment allowing them to exert or feel as though they have at
least some degree of control.
Control and Stress. Control is also an important factor in consideration of the
effects of social support. Locus of control is a center of responsibility for one’s behaviors
(Anderson, Anderson, & Glanze 1998). Individuals with an internal locus of control
believe they can control events related to their life, whereas those with an external locus
of control tend to believe that real power resided in forces outside themselves and
determines their lives (Anderson et al, 1998). The identified locus of control for an
individual greatly impacts their perception of support given as well as support received.
Caldwell et al (1987) found locus of control has an important impact on
perception of social support and stress moderating, where those that identified an external
locus of control reported receiving more social support than subjects classified as having
an internal locus of control. Even though persons with an internal locus of control
reported receiving less social support, they were found to make more effective use of the
support they did receive (Caldwell et al, 1987). This was noted because the stress
buffering effect of social support was found to be stronger for internal locus of control.
16
Caldwell et al (1987) found that locus of control orientation did not affect the impact of
stress on symptom formation for women, but it did have an important effect for men.
Men with an internal locus of control were more likely to develop psychosomatic health
symptoms under stress whereas external men were more likely to become depressed
(Caldwell et al, 1987).
Support as a Buffer. Viewing social support as a stress buffer suggests that social
support affords the person a degree of protection from potentially stressful events. Cohen
and Willis (1985) suggested that support might play a role at two different points in the
causal chain linking stress to the effects of stress on the person. They suggest that
support may intervene between the stressful event and the stress reaction by preventing a
stress appraisal response (Cohen & Willis, 1985). In other words it is possible that the
person will not perceive the potential threat as a stress due to the belief that they have
adequate resources upon which to draw and protect themselves from the threat. The
second notion is that adequate support may intervene between the experience of stress
and the adverse effect by reducing or eliminating the stress reaction or by directly
influencing physiological processes (Cohen & Willis, 1985).
Support can work in many ways to alter the perception of the stressor. Support
might provide a solution to the problem and thus reduce the potential of a response by the
person experiencing the stress. Bliese and Britt (2001) reiterate this notion in more
recent literature suggesting that social factors may ameliorate the negative effect of
stressors. They provide the example that factors such as cohesion were the reason the
German soldiers in the Wermacht were able to maintain morale and performance in the
face of intense combat stressors (Bliese & Britt, 2001). They tested this example in a
17
study designed to assess United States Army soldiers deployed to Haiti and their response
to a stressful situation. Bliese and Britt (2001) found that a positive social environment
helped individuals cope with stress.
Literature describes a link between the presence of social support and the nature
of the stress response is established. Another strong link is established in the literature in
regards to social support and illness response.
Social Support and Health
It has been suggested that social support may play a physiologic role in
modulation of health through the stress response system. Chronic exposure to
psychosocial stress may alter the hypothalamic-pituitary-adrenal axis function (Baum &
Poslenzky, 1999). Indirect effects of the central nervous system on immune function
involve the hypothalamic-pituitary-adrenal axis. Through this somewhat complex
mechanism of positive and negative feedbacks the central nervous system regulates the
activation and modulation of the immune system while at the same time stimulating the
stress response. The stress-induced alterations in equilibrium of various hormones
controlled by the hypothalamic-pituitary-adrenal axis have a significant effect on the
immune response. Whether this impact on immune function is suppressive or
potentiating depends on the type of immune modulating factors that are secreted, with
some factors known to have enhancing or suppressing activities, or both, depending on
the concentration and length of exposure, the target cell, and the specific immune
function (Shelby & McCance, 1998). The hypothalamic-pituitary-adrenal axis plays a
key role in functioning of physical and mental health in humans.
18
Social Support and Mortality. Evidence suggests that social support can have a
positive impact on health and decrease mortality from many different causes (DeVries et
al, 2003). In a review of a study on stress, DeVries et al (2003) noted the level of social
support significantly correlated with the rate of progression from asymptomatic to
symptomatic stages of human immunodeficiency virus (HIV) infection in men. These
researchers also found that stressful life events and increase serum cortisol concentrations
were associated with faster progression to acquired immune deficiency syndrome (AIDS)
in HIV positive men (DeVries et al, 2003). It has been noted that stressors increase the
level of strain thus leading to poor health and/or poor psychological well-being (Bliese &
Brett, 2001; Cohen et al, 1985; DeVries et al, 2003). These notions are reiterated
frequently throughout social support literature suggesting that social support is beneficial
to buffer the effects of stress and in the prevention of adverse health outcomes are
supported.
Social Support and Illness
Social support also appears to play a role in lessening the severity and/or
progression of present health problems. Persons that are more isolated and lack a social
network emerge as a group with high mortality and morbidity rates. Two key studies
demonstrate this notion, the first is a study that found less socially integrated people were
more likely to commit suicide than the more integrated persons (Durkheim, 1951). The
second study found a longer life expectancy in men who were married than in their single
counterparts (Carter & Glick, 1970). Authors House, Landes, and Umberson (1988)
point out that there is some difficulty in determining a casual interpretation and
explanation of these associations. They ask these poignant questions: Does a lack of
19
social relationships cause people to become ill and die? Or are unhealthy people less
likely to establish and maintain social relationships? Or is there some other factor, such
as a misanthropic personality, which predisposes people both to have a lower quantity
and quality of social relationships and to become ill? (House et al, 1988). These
questions are not easily answered even today. Researchers noted that there is a positive
correlation between social support and level of health. It would appear that social
support promotes adaptive behavior and modulates the hypothalamic-pituitary-adrenal
axis response in the face of stressful situations and the threat of ill health. However, it is
difficult to determine the significance of social support on health due largely in part to the
multidimensional nature of social support as previously discussed.
Benefits of Social Support on Illness. Social support has been linked to positive
impacts on health including reducing mortality rates and improving recovery from
serious illness (Berkman & Syme, 1979; Bliese & Brett, 2001; Carter & Glick, 1970;
Cohen & Willis, 1985; DeVries et al, 2003; Glass, Dym, Greenberg, Rintell, Roesch, &
Berkman, 2000; House et al, 1988). Social support also plays a role in specific disease
progression and coping (Berkman & Syme, 1979; Bliese & Brett, 2001; Carter & Glick,
1970; Cohen & Willis, 1985; DeVries et al, 2003; Glass et al, 2000; House et al, 1988).
Social support plays a role in health promotion and disease prevention. It has
been shown to be influential in maintaining health and preventing disease for both men
and women as well as helping to cope and adapt to a variety of medical problems (Glass
et al, 2000).
The presence of a social support network has a positive impact on longevity and
decrease in mortality (Berkman & Syme, 1979 & Glass et al, 2000). Berkman and Syme
20
(1979) conducted a large-scale study in Alameda County in California on social support
and established that people with the lowest level of social contact had mortality rates
greater than those with strong social networks. These findings were reinforced even
when lifestyle factors such as smoking, alcohol, and physical activity levels were taken
into consideration.
Hurdle (2001) proposed that there was a significant increase in the utilization of
health promotion and disease prevention programs when the programs were introduced to
the intended recipients in the milieu of a group format. Other means such as the buddy
system and peer role models also increased social support and resulted in increased
utilization of these programs (Hurdle, 2001). Self-help programs such as Alcoholics
Anonymous (AA) also incorporates the notion of social support to increase health
promotion and disease prevention. Groups such as AA utilize designated sponsors or
buddies to help the individual progress through potentially difficult and stressful times.
Social Support and Chronic Illness
The existence of relationship between social support on stress, health promotion
and disease prevention results in an inability to ignore the likelihood of an association
between social support and a disease state. A great deal of research exists presenting
examination of how social support positively influences disease states including
HIV/AIDS, cardiovascular disease, endocrine disease, and cancer, as well as decreasing
mortality rates associated with many disease states.
Higher levels of social support have been related to a decrease in overall blood
pressure and decrease in mortality associated with adverse cardiovascular outcomes,
specifically myocardial infarct (Uchino et al, 1996). As previously mentioned, social
21
support is implicated as to having a buffering effect on stress response, which is closely
tied to the endocrine system through the hypothalamic-pituitary-adrenal axis (DeVries et
al, 2003). The progression of HIV to AIDS has been slowed through a strong social
support system as is demonstrated by several researchers (DeVries et al, 2003 & Uchino
et al, 2003).
Social Support and Cancer
Chronic disease and illness can be very stressful and the effects of social support
can have a many positive benefits on the recipients. A diagnosis of cancer carries a great
deal of emotion and fear of uncertainty. Social support in the face of a diagnosis
regarded as a life crisis can impact the course of the disease, positively or negatively.
Cancer patient’s need for support is often extended beyond the initial diagnosis and well
into the treatment phase and frequently beyond remission.
Cancer and its associated treatments may require a fundamental change in
lifestyle, which, prompts the person to question their personal identity and self worth. It
is important to consider the amount and type of social support that will be available as
adjustment to this diagnosis is made (Price, 2003).
Models of Social Support in Cancer. Three theoretical models by which social
support may influence the impact of stressful life events on cancer patients psychological
state were described by researchers examining the impact of stressful life events in
women with breast cancer (Kornblith, Herndon, Zuckerman, Viscoli, Horwitz, Cooper,
Harns, Tkaczuk, Perry, Budman, Norton, & Hilland, 2001). The three models are as
follows: 1) the addictive model, in which social support and stressful life events each
22
directly influence concepts adjustment, irrespective of the magnitude of the other; 2) the
buffering hypothesis, previously discussed in which stressful events occurring in the
presence of social support should produce less distress than if the occurred in it’s
absence; and 3) both addictive and buffering model (Kornblith et al, 2001).
In this study the researchers conducted phone interviews with 169 patients who
had Stage II breast cancer utilizing the MOS Social Support Survey, Life Experience
Survey, European Organization for Research on the Treatment of Cancer, Mental Health
Inventory, and the Systems of Belief Inventory (Kornblith et al, 2001). The authors
tested each of the models they identified explaining how social support may influence the
impact of stressful life events on women with breast cancer. When each model was
tested on women with breast cancer the addictive model was supported. Both stressful
life events and social support independently affected patient emotional state (Kornblith et
al, 2001). Of note, the level of social support needed to be very high to reduce the
likelihood of severe psychological distress (Kornblith et al, 2001).
Social Support on Psychosocial Well Being in Cancer. Social support plays a role
in adjustment to a life changing diagnosis of cancer (Kornblith et al, 2001). The
literature supports the notion of a positive affect of social support and psychosocial wellbeing (Bliese & Britt, 2001; Cohen & Willis, 1985). Research currently is looking at the
physical effects of social support on cancer progression and indicators (Lutgendorf et al,
2002). One such study measured vascular endothelial growth factor (VEGF) and social
support in patients with ovarian cancer. Vascular endothelial growth factor is a key
cytokine that is capable of stimulating tumor angiogenesis and it has been associated with
poorer survival in patients with ovarian cancer (Lutgendorf et al, 2002). Researchers
23
compared results from a quality of life survey and a mood profile to serum VEGF levels.
Women with ovarian carcinoma who reported higher levels of social well-being had
lower levels of VEGF (Lutgendorf et al, 2002). Researchers noted that greater support
from friends and neighbors and less distance from friends were facets of social wellbeing and were associated with lower VEGF levels while individuals who reported
greater helplessness or worthlessness had higher levels of VEGF (Lutgendorf, 2002).
Social Support as a Function of Gender and Cancer. Many studies have focused
on the effects of social support as they apply to women with cancer, there are fewer
studies recognizing the effects of social support as they apply to men. This phenomenon
may be related to recurrent findings that males report not needing or wanting as much
support as their female counterparts (Markwood, McMillan, & Markwood, 2003).
Goodwin, Samet, & Hurt (1996) briefly suggested that characteristics such as poor social
support, limited access to transportation, and impaired cognition can delay treatment and
increased the risk for inadequate treatment especially for older men with prostate cancer.
Other factors such as being uncomfortable in group or individual setting may hinder men
from participating in social support groups (Gotay & Bottomley, 1998). In such
situations other means of providing support may need to be explored such as providing
psychosocial support by telephone (Gotay & Bottomley, 1998).
A diagnosis of cancer can lead to feelings of anxiety as well as a lack of control
and feeling of uncertainty regarding the future. According to the literature a strong social
support network can buffer some of these feeling and successfully help the patient
diagnosed with cancer cope and progress through treatment and illness. Social support
24
has been shown exert a positive and important influence on a patient’s adapting to the
changes in their life that accompany a diagnosis of cancer.
A large body of literature addresses social support and its positive attributes.
There is very little information addressing negative aspects associated with social
support, however it bears noting that these aspects do exist and can greatly impact a
persons ability to give and receive support. As previously noted in Hupcey’s (1998)
article “Clarifying the Social Support Theory Research Linkage,” there are several
models that have suggested a negative social support interaction. In these models the
recipient may receive more support than is reciprocated, the recipient may provide more
support than is received, and support may be provided in a negative way, perceived as
negative, or the outcome is negative (Hupcey, 1998). Social relationships can be viewed
as negative especially when the relationship threatens the individual’s self-esteem,
autonomy, and ability to make choices (Bottomley & Jones, 1998). If the support
provided is more than is reciprocated the recipient may have feelings of dependency or
may feel as thought they are being treated as an infant and believed to be incapable of
doing anything for themselves (Bottomley & Jones, 1997). Social support relationships
can also have a negative effect in dealing with illness if the provider is unwilling or
unable to discuss the disease and or the treatment in fear of upsetting the person with
cancer (Bottomely & Jones, 1997). While the benefits affiliated with social support are
of significance it is also important to remember that good intentions may be perceived in
a negative light.
25
Social Support Development in Childhood and Adolescence
Social support can influence a person through their lifetime and is present before
the person may be cognitively aware of its presence. Social support plays a significant
role in emotional and psychological growth and development of the adolescent and young
adult. Adolescence has been viewed as a tumultuous time during which the adult to be
begins to emerge and be shaped. It is also during this time that social networks outside
the immediate family begin to form and become a central part of the adolescents and
young adults life. It has been suggested that the need for intimacy is one characteristic
that emerges in adolescence (Haluska, Jessee, & Nagy, 2002). Adolescents look
primarily to their peer groups, especially their best friends to meet their needs for
intimacy. It is through their peers that adolescents fulfill their needs for social support.
Erikson’s Stages of Psychosocial Development. Psychologist and behaviorist
Erik Erikson (1950) believed that one of the most important tendencies we are born with
is the drive for identity. Erikson (1950) believed that personality developed gradually
over time as a result of interactions between physical maturation, inborn drives, and
experiences with the environment. Erikson defined eight unique stages of psychosocial
growth and development and concluded that a particular task or need must be met before
the person can move on to the next stage of development. The two stages that preoccupy
the adolescent and young adult years are formally titled identity versus role confusion
and intimacy versus isolation. The identity versus role confusion stage occurs from age
13 to18. During this stage the adolescent must adapt a sense of self to physical changes
of puberty, make occupational choices, achieve adult-like sexual identity, and search for
new values (Erikson, 1950). This phase continues from age 19-25 into the intimacy
26
versus isolation stage. During this time the person must form one or more intimate
relationships that go beyond adolescent love then marry and form a family group
(Erikson, 1950). Disruption in the progression of stages can promote difficulty forming
bonds and establishing identity.
Adolescence and Peers. During adolescence, peers become a major component of
the adolescent’s social network. Adolescents may still turn to their family, specifically
their parents, to seek guidance and receive support.
Social support can have a great impact on development of the psyche in
adolescence. Preadolescents who reported low satisfaction with their social support had a
higher probability of having problems with anxiety, depression, and sleep disturbance
(Dumont & Provost, 1999). Researchers have also found that in adolescents and young
adults decreased satisfaction with social support was associated with depressive or
psychosomatic symptoms, anxiety, and interpersonal sensitivity (Burke & Weir, 1978;
Compas, Slavin , Wagner, & Vannatta, 1986; & Dumont & Provost, 1999).
During the period of adolescence the pre-adolescent begins to transition and form
a social network comprised primarily of family members to one that is centered around
peers. Of note this transition does not necessary signal the end of a relationship and a
disengagement of the adolescent from his or her parents. Researchers have suggested
that the stronger the relationship between parent and adolescent the stronger the identity
and development of autonomy experienced by the adolescent (Dornbusch, Peterson, &
Hetherington, 1991 & Haluska et al, 2002). Larson, Richards, Moneta, Holmbeck, and
Duckett (1996) along with Haluska et al (2002) suggest that although the adolescents
spend less time with their family members the time spent in communication with the
27
family members did not decline. Peer interactions play a significant role in personal
growth and development for the adolescent, however family support continued to be
important and played a significant role in the adolescents life. Burke & Weir (1978)
along with Haluska et al (2002) note that among the positive developmental outcomes
from this socialization with peers are self-understanding, emotional regulation, and
formation of relationships.
Social Support Development in Children, Adolescents, and Young Adults with Cancer
Adolescence has been shown to be a difficult time of transition. Formation of the
social identity occurs within the context of peer and family facilitated support. The
ability to cope and adapt to changes and life stressors is intimately related to the presence
and quality of a social support system. Support from family members played an
important role, however support from peers cannot be overlooked as a significant source,
especially for the adolescent. Past and current literature has established a connection
between psychological and physical health. The existence of this relationship is
essential; because of this it is important to recognize the significance of formation and
continuation of a social network. Adolescents who spend less time with family members
generally spend more time interacting with their peers; friendships are the principal
feature of adolescent social development (Hartup, 1993; Haluska et al, 2002).
Friendships are of the utmost importance during adolescence because these relationships
provide opportunities for interaction that are not otherwise available (Haluska et al,
2002). Disruption of the formation of peer support networks can likely affect the
psychological maturation of the individual and may have an impact on physical health.
28
Advancements in research and treatment have lead to an increase in survival rates
for children and adolescents diagnosed with cancer. Historically, cancer was almost
always fatal, but due to recent advances in treatment cancer is reaching curable rates up
to 80% (Harvey, Hobbie, Shaw, & Bottomley, 1999; ACS, 2003). Survivors of
childhood cancer and their families now are faced with a broad range of physical and
psychological challenges imposed by the disease and treatment. Some survivors will
suffer the long-term effects for the rest of their lives (ACS, 2003). Harvey et al (1999)
report that the effects of cancer treatment can greatly impact the physical and
psychological development of the survivor. The medical community can often trivialize
the effects of cancer, especially when compared to the experiences the survivor may have
faced while in treatment.
Late Effects Study Group. In the mid 1960s the Late Effects Study Group was
formed to critically analyze the potential effects of cancer and cancer treatment (Harvey
et al, 1999). The Late Effects Study group was a cohort of 1,380 children and
adolescents diagnosed with Hodgkin’s Disease between 1955 to 1986, all participants
were 16 years of age or younger (Harvey et al, 1999). The study was initiated to
determine the appropriate treatment necessary to maintain cure rates and minimize the
potential for late effects of therapy (Harvey et al, 1999). A member of the research team
Dr. D’Giulio D’Angio declared that “children cured of cancer must be followed for life,
not so much because late recurrence of disease is feared as to permit early detection of
the delayed consequences of radio and chemotherapy (D’Angio, 1975). The Late Effects
Study group was the first formal attempt to gather information and analyze the possible
effects associated with an organized and ongoing therapy (Harvey et al, 1999). The Late
29
Effects Study Group determined that multidisciplinary medical follow up was important
but issues including psychosocial facets are also key so that the childhood cancer
survivors of today will not become the chronically ill adults of tomorrow (Harvey et al,
1999). The results of the formal evaluation of the Late Effects Study Group are
significant in light of the increasing population of childhood cancer survivors. The
presence of a program in place to formally evaluate survivors of childhood cancer
becomes as important a facet of treatment as chemotherapy and blood counts. Indeed a
study conducted by the Children’s Cancer Group and the Pediatric Oncology Group
revealed that 96 institutions had some form of long term follow-up program for survivors
of childhood cancer (Oeffinger, Eshelman, Tomlinson, & Buchanan, 1998).
Previous research has demonstrated a possible relationship between a healthy
psychosocial being and positive health outcomes in light of this relationship and the
suggestions of the Late Effect Study Group the importance of the formation of social ties
cannot be undermined. Indeed the National Summit Meeting on Childhood Cancer
sponsored by the American Cancer Society, recommended addressing the required
component of psychosocial support, noting, “Meeting emotional, psychological, and
spiritual needs of the patient enhances a positive response to treatment” (ACS, 2002).
Psychosocial Growth and Development. Growth and development on
psychosocial level of the individual is a key component in care of adolescents and young
adult survivors of cancer. Having problematic peer relationships during childhood and
adolescence is of considerable concern given the importance of these relationships for
health and emotional adjustment (Vannatta, Garsten, Short, & Noll, 1998). Peer
relationships have been identified as playing a central role in children and adolescent’s
30
social and emotional development (Sullivan, 1953; Vannatta et al, 1998). Hartup (1983)
notes peer relationships are fundamental for the development of adequate social skills and
for the emergence of healthy self-concept. Not only do peer relationships influence selfconcept but they also serve as predictive indicators of current adjustment as well as future
adaptation (Hymel et al, 1990; Vannatta et al, 1998). The nature of a diagnosis of cancer
and the treatment of cancer set the predisposes the child and/or adolescent to a potential
for isolation. During treatment, responses like neutropenia and extreme fatigue, may
require social isolation. Parents of the child and/or adolescent may instinctively choose
to “protect” them and in so doing may sever any social ties previously established.
One of the most common forms of childhood cancer are brain tumors, accounting
for approximately 1,200 new cases per year in the United States (Vannatta et al, 1998).
To evaluate the behavioral reputation and peer acceptance of children diagnosed and
treated for brain tumor Vannatta et al, (1998) compared 28 children surviving brain
tumors to 28 nonchronically ill peers. The researchers collected peer, teacher, and selfreport data from all participants in an attempt to study peer relationships. Vannatta et al
(1998) found that children treated for brain tumors were selected less often as a best
friend and were frequently viewed by teacher, peers, and self as socially isolated. They
also found that peers of children survivors of brain tumors perceived the survivor as
being sick, fatigued, and frequently absent form school even though these children were
no longer receiving active treatment (Vannatta et al, 1998). These results in addition to
finding on a formal questionnaire are suggestive of further difficulties in peer and social
relations later in life for children surviving brain tumors (Vannatta et al, 1998).
31
Social isolation experienced by children and adolescents with cancer is further
compounded by the response of peers to the person. These responses can be amplified
when evidence of the disease or it’s treatment are obvious. In such cases others in the
environment may alter their response to the child thus causing the child to feel different
(Hymovich, 1995). Rejection by those who are not chronically ill can lead to feelings of
self-consciousness, fear, maladjustment, and withdrawal (Gething, 1985). These findings
may suggest an explanation for a typical response from cancer survivors in regards to
peers “other people just don’t understand” and “I’ve never met anyone like me that
understands what I am going through.”
It is undeniable that a diagnosis of cancer can greatly impact the physical and
psychological well being of the individual. This notion is especially true when applied to
children and adolescents with cancer. The period of time encompassing childhood and
adolescence is essential for formation of peer social networks and psychosocial formation
of the future adult. Disruption of this process is common with a cancer diagnosis and
subsequent treatment, the result is a person with poor social networks, possible
maladaptive behaviors, and potential adverse effects on later health status. These adverse
reactions can potentially be averted if a strong social network can be achieved and
maintained. Establishment of such a network and validation of feelings specific to those
diagnosed with cancer and receiving treatment may have profound effects on the
individual’s psychosocial development. Forming these networks becomes a major focus
of health care providers, family members, and the individual. One means to accomplish
this may be bringing many individuals undergoing a similar experience together to meet,
32
discuss, and form bonds that may last a lifetime and provide the benefits clearly
associated with a strong social support network.
Social Support and the Camp Experience
A camp experience for children, adolescents, and young adults diagnosed with
cancer may offer an environment in which social networks can be formed and
strengthened. A medically supervised camp has the potential to provide a positive milieu
in which cancer survivors could meet, discuss their experiences, and form social support
networks. The literature examining the effects of a camp experience on children and
adolescents with cancer in regards to social support is limited. There is very little
information available to quantitatively measure the effects of a camp experience most
information available is primarily anecdotal in nature.
It has been suggested that attendance at an oncology camp can enhance self
esteem, improve communication about cancer especially among family members, and
contribute to the person’s knowledge of the disease and it’s treatment even in the absence
of formal educational programs (Benson, 1987; Smith, Gotlieb, Gurwitch, & Blotcky,
1987; Bluebond-Langer, Perkel, Goertzel, McGeary, & Nelson, 1990). Through shared
experiences children, adolescents, and young adults have a similar foundation upon
which a peer relationship can be established. The amount of time available to establish
peer relationships is also an important factor. One study suggested that an inability to
spend time with peers plays a major role in an inability to develop peer relationships
(Bluebond-Langer, Perkel, & Goertzel, 1991). Parents that limit their child’s access to
peer groups, as parents of handicapped and ill children and adolescents often do, further
exacerbate problems for themselves and their child (Bluebond-Langer et al, 1991).
33
The above results were found in a study conducted by researchers BluebondLangner et al (1991) over two years at a summer oncology camp in Pennsylvania.
Researchers used a case-study quasiexperimental design including detailed, structured,
open-ended interviews with children and adolescents with cancer before and after camp
(Bluebond-Langner et al, 1991). A questionnaire was also administered to parents
before and after the session (Bluebond-Langner et al, 1991). The investigators also
conducted field observations at the camp and affiliated treatment centers during the study
(Bluebond-Langner et al, 1991). Using 50 children and adolescents age 7 to 16 years,
researchers found that the children and adolescents formed relationships that extended
beyond the seven-day camp experience and had difficulty separating at the end of the
camp session (Bluebond-Langer et al, 1991). The researchers also found that the
relationships did not end with camp. Aside from the contact provided during the camp
reunion, clinic visits, and hospitalization, 27 children and/or adolescents (54%) also
staying in touch through letters and phone calls (Bluebond-Langer et al, 1991). Not
surprisingly the researchers found that the relationships formed at the camp were unlike
any established with healthy peers in that they shared a common experience upon which a
significant relationship was built (Bluebond-Langer et al, 1991). However the
researchers noted that the relationships established with peers with cancer helped the
survivor develop and maintain relationships with healthy peers (Bluebond-Langer et al,
1991). These finding suggest the potential for further study in the effect of camp on
children, adolescents, and young adults diagnosed with cancer.
Objective on Oncology Camp. Research and anecdotal narratives have suggested
that there are many benefits associated with a camp experience for the cancer survivor
34
and the family. Swensen (1988) suggested six important objectives of oncology camp in
meeting the goal of providing a positive camp experience, including: 1) emphasizing the
normalcy of each camper, that is although the campers may be undergoing some painful
experiences they are still normal, the emphasis becomes what each camper can do, not
what they cannot 2) alleviating at least in the short term, the anxiety and depression
experienced by the campers 3) ameliorating the sibling’s sense of isolation and neglect,
much of the attention of the family is directed toward the child, adolescent, or young
adult with cancer thus inevitably resulting in some anger and resentment of the well
sibling toward the cancer patient 4) providing opportunity for a sense of mastery and
efficacy in peer relationships, physical changes in appearance and frequent school
absences can serve as catalysts to deterioration in any child, adolescent, or young adult
with cancer resulting in an inability to establish successful peer relationships, the
fostering of friendship and intimacy within camp may help the cancer patient establish
health relationships with healthy peers 5) elevating self-esteem among cancer patients, it
is clear that self-esteem can greatly impact psychological well being, increasing selfesteem can have a positive impact on the long-term psychological well being 6) edifying
those of us who do not know the experience first hand, cancer is a far-reaching disease
that can potentially affect one in every five individuals. A greater understanding of the
total emotional and physical experience can lead to better understanding and better care.
Through these objectives a positive camp experience can be realized for the camper as
well as the staff members.
Anecdotal Benefits of Camp. Attending camp as a child or adolescent is
considered to be a “normal” experience and in many ways a right of passage. Children
35
and adolescents with medical conditions may be denied entrance to camps. Specialized
camps like oncology camps can offer the camper a chance to be normal and provides a
positive environment and ultimately a positive experience for all involved. Campers with
cancer attending an oncology camp can benefit from exposure to other children,
adolescents, and young adults with problems and issues similar to their own and from the
challenges that camp provides, all of which facilitate peer interaction and support
(Johnson, 1990). Camp offers an opportunity for growth and acceptance. Fochtman
(1993) notes in an editorial, a week at camp can have it’s highs and lows but by the end
of the week the campers have a mutual understanding and concern for each other as well
as a sense of love, sharing, and togetherness. It is a chance for everyone to be normal,
grow, and challenge boundaries. Kline (2001) in her editorial recounts some of her
fondest memories of camp, “a wheelchair bound teen aged girl, paralyzed since the age of
two by a spinal tumor, who had her first dance at camp” and the “12-year-old with the
posterior fossa syndrome who finally began to eat at camp and for the first time in six
months did not require total parenteral nutrition when she got home”. Kline (2001) also
tells of the “19 year old who was in the terminal stages of illness but wanted to come and
have the opportunity to be a junior counselor.” Finally, Feeg (1989) notes in her editorial
that while attending an oncology camp the campers will live and share experiences with
other children and adolescents with similar problems and needs, the very act of sharing
will be of enormous psychological benefit. There are many more anecdotal stories
extolling the benefits of oncology camps in forming and maintaining social interactions.
Although one cannot ignore the presence of these first hand accounts it is worth noting
36
that there is very limited research into the area to quantify or even qualify the benefits
associated with a oncology camp experience or any other medical camp experience.
Summary. Limited quantitative and qualitative research is available exploring the
camp experience and its impact on illness. Through anecdotal recounting of camp
experiences it has been suggested that a camp experience can have a positive impact on a
person with cancer. The benefits appear to be associated with the development and
fostering of peer relationships with others having a shared experience like cancer as well
as with healthy peers. There is a significant gap in the literature addressing these issues.
The potential for research to explore the phenomena that is camp and its impact on social
support is great. It is for this reason it appears reasonable to address the question, is there
a significant difference in perceived social support before and after a week long camp
experience with other young adults diagnosed with cancer?
37
CHAPTER 3
METHODS
Population and Sample
A non-random convenience sample of 18 to 25 year olds with a diagnosis of
cancer attending a weeklong oncology camp at Camp Mak-A-Dream in western
Montana, were selected to participate in the research. All participants in the camp are
able to attend the camp free of charge, and there were also funds available to help with
travel cost if needed. Most referrals for camp attendance came from recommendations
from previous campers; campers are also referred to attend camp through social workers
at their home treatment centers. The average camp size is 30 –40 participants per session
and most campers come from areas outside of Montana.
Setting
The camp is located in a rural area of Montana, approximately 70 miles from a
population center of Missoula, MT. The camp was specially designed to meet most
medical needs of campers including administration of chemotherapy when needed,
laboratory sampling for blood counts, and ability to access blood products for
administration if necessary. The camp is also able to care for most needs that arise at any
camp, skinned knees, cuts, scrapes, and bug bites. All activities are optional and are
supervised by trained staff members.
38
Sampling Procedures
The study and survey material were reviewed with all of the campers on arrival to
camp during medical check in procedures. Campers willing and able to participate were
asked to read and sign an informed consent form prior to completing the survey. The
survey and procedure were reviewed and discussed with counselors and research
assistants prior to the arrival of campers. The counselors and research assistants were
available during the pre-test and post-test to answer questions and assist the participants
as needed.
Design
The study design is quasi-experimental due to the lack of a control group
consisting of young adults not attending camp. The dependent variable to be tested is
report of perceived social support. The dependent variable was measured by comparing
means for the pretest and the posttest on the MOS Social Support Survey utilizing the
subscales and the overall index of support. The identified subscales on the MOS Social
Support Survey include Tangible support, Affectionate support, Positive interaction
support, and Emotional/Information support. The overall index of support was calculated
using each of the subscales scores and one additional item (Sherbourne & Stewart, 1993).
The dependent variable was assessed based on scores obtained from the MOS Social
Support Survey in the pretest then compared to the posttest MOS Social Support Survey
results. The comparison was made by calculating the mean score on each subscale of the
MOS Social Support Survey as well as the overall support index, which is calculated by
obtaining the mean score from all items on the scale including the subscales and the one
39
additional item. The pre-test and post-test scores were compared using a paired t-test in
SPSS. The independent variable is time, with the pre-test occurring prior to the camp
experience and the post-test occurring after the experience.
Instrument
A four-part survey was designed for this study utilizing pre-existing tools
accessed through the Rand Corporation and other sources. The first section asked
participants to provide demographic information. The questions for the demographic
information were obtained from the United States Census Bureau so as to be worded in
an understandable way. The other three sections addressed current health and social
support with the final section consisting of open-ended questions about the participants
experience prior to and after camp (See Appendix A).
Although data were collected utilizing the RAND 36-Item Health Survey 1.0
Questionnaire the data were not analyzed or compared for the participants in this study.
The RAND 36-Item Health Survey was utilized as a means of gathering health status
information about the campers. Data collected for the scale however was incomplete due
to an input error in formation of the instrument. These data were subsequently not used
in analysis of results
The Medical Outcome Study (MOS) Social Support Survey is a brief,
multidimensional, self-administered survey that was designed to be comprehensive of the
various dimensions of social support (Sherbourne & Stewart, 1993). The four functional
support scales measured emotional/informational, tangible, affectionate, and positive
social interaction. Participants responded to statements representing the four functional
support areas by selecting a response that best corresponded to their experience.
40
Responses corresponded with a 5-point Likert scale ranging from one (none of the time)
to 5 (all of the time). These support measures are distinct from structural measures of
social support and from related health measures (Sherbourne & Stewart, 1993). The
reliability for the subscales and overall support index is reported in Table 1. Items from
the MOS Social Support Survey were randomized within the survey participants
completed. The survey utilized in this study is included in Appendix A.
Table 1. Published Alpha Reliability Scores for MOS Social Support Survey
(Sherbourne & Stewart, 1991)
Alpha
N of
N of
Measure
Cases
Items
Emotional/Informational Support
0.96
2987
8
Tangible Support
0.92
2987
4
Affectionate Support
0.91
2987
3
Positive Social Interaction
0.94
2987
3
Overall Support Index
0.97
2987
19
Table 1 reports alpha reliability scores from the MOS Social Support Survey as
reported by Sherbourne and Stewart (1991). These scores can be compared to the alpha
scores found in this study as reported in Table 2. The current study’s alpha reliability
scores are similar to those reported by Sherbourne and Stewart thus suggesting the
instrument performed well with the sample and internal consistency was appropriate.
41
Table 2. Alpha Reliability Analysis of MOS Social Support Survey Current Study
Alpha N of
Measure
N of
Cases
Items
Emotional/Informational Support
0.929
39
8
Tangible Support
0.885
39
4
Affectionate Support
0.799
39
3
Positive Social Interaction
0.978
39
3
Overall Support Index
0.934
39
19
Procedures
Data was gathered from young adults who were attending the week long camp at
Camp Mak-A-Dream held in western Montana for young adults diagnosed with cancer.
Institutional Review Board Exempt approval was obtained from Montana State
University and the camp administration (See Appendix C). Participants were asked to
read and sign a informed consent form prior to completing the survey. A copy of the
consent form is included in Appendix B.
An explanation of the instrument and the consent form was given to campers
interested in participating as identified by a research assistant and or counselors familiar
with the instruments and procedure on the first day of camp as participants were being
checked in with the medical staff upon arrival. Participants were given the time
necessary to complete the survey and a quite environment in which to complete the
survey. Several camp counselors familiar with the instrument and procedure were
present to answer questions and collect materials. The survey included demographics,
the Rand 36-Item Health Survey, the MOS Social Support Survey, and the pre-test
42
qualitative questions. The participants were asked to fill out a similar survey on the last
full day of camp prior to attending the closing ceremony. Participants were given ample
time and a quite environment in which to complete the survey. Several camp counselors
were present to answer questions and collect materials. The survey included the Rand
36-Item Health Survey, the MOS Social Support Survey, and the post-test qualitative
questions.
Treatment of Data
MOS Social Support Survey
Scores from the MOS Social Support Survey were calculated by averaging the
scores for each item in the subscale. An overall support index was calculated by
averaging the scores for all 18 items included in the four subscales and the score for the
one additional item. Responses to the MOS Social Support Survey were assigned
numerical value; ranging from 1, none of the time to 5, all of the time. The results from
each subscale and the overall index were tested for reliability using SPSS software.
Definitions
There are several terms associated with the study requiring definitions to further
understanding of the data. The following table contains the definitions using both a
conceptual definition and operational definitions.
43
Table 3. Definitions
Term
Conceptual Definition
Young Adult The stages of life from 22 to 65 years of
age (young and middle adult) (Anderson,
Anderson, & Glanze, 1998).
Cancer
Social
Support
A neoplasm characterized by the
uncontrolled growth of anaplastic cells
that tend to invade surrounding tissue and
to metastasize to distant body sites
(Anderson, Anderson, & Glanze, 1998)
Social support is the perceived availability
of functional support wherein functional
support refers to the degree to which
interpersonal relationships serve particular
functions (Sherbourne & Stewart, 1991).
The functions served by support include
emotional support which involves caring,
love and empathy, instrumental support
and information, guidance or feedback
that can provide a solution to a problem,
appraisal support which involves
information relevant to self evaluation,
and social companionship, which involves
spending time, with others in leisure and
recreational activities (Sherbourne &
Stewart, 1991).
Operational Definition
A person between and
including the ages of 18
years of age to 25 years of
age.
Leukemia, Lymphoma,
Brain Tumor,
Osteosarcoma, and
Kidney Tumor
A score on the MOS
Social Support Survey so
that the lowest possible
score was 0 and the
highest possible score was
100, indicating more
frequent availability of
different types of support,
if needed (Sherbourne &
Stewart, 1991).
44
CHAPTER 4
RESULTS
Sample Demographics
The sample contained 42 participants. Pre-test and post-test data were compared
and participants who did not complete both portions of the survey were eliminated from
the data analysis. There were 29 participants that completed both pre and post tests of the
survey, Table 3, 4, and 5 contain demographic data for the sample.
Table 4. Age, Sex, Race, and Educational Level of Sample
Response
Number
of Cases
Reported
Age*
18 years old
4
19 years old
6
20 years old
5
21 years old
6
22 years old
1
23 years old
3
25 years old
2
Gender**
Male
9
Female
18
Race***
White
22
Black or African American
3
Asian
3
Education****
Grade 12 or GED (high school graduate)
12
College 1-3 years (some college or tech sch) 12
College 4 years or more (college graduate)
3
* 2 participants did not indicate their age.
** 2 participants did not indicate their gender.
***1 participant did not indicate race.
****2 participants did not indicate education level.
% of Total
Sample
13.8
20.7
17.2
20.7
3.4
10.3
6.9
31
62.1
75.9
10.3
6.9
41.4
41.4
10.3
45
Of these participants there were 18 or 62% were females and 9 or 31% were
males and 2 participants that did not indicate their gender. The mean age of the
participants completing both sections was 22 years of age. Most participants reported
their race as white (75.9% or 22), black or African American (10.3% or 3), or Asian
(6.9% or 2) one participant did not indicate their race. The highest educational level
obtained was college graduate with most participants reporting that they were high school
graduates or had some college or technical experience, two participants did not indicate
their educational level.
Table 5. Marital Status, Living Arrangement, and City/Town Population for Sample
Response
Number % of Total
of Cases Sample
Reported
Marital Status
Never Married
26
89.7
A member of an unmarried couple
3
10.3
Living Arrangement
Live alone
3
10.3
Live with spouse of significant other
1
3.4
Have a roommate
5
17.2
Live with parents or other family member
20
69
City/Town Population
< than 5,000 people
3
10.3
5,001- 10,000 people
4
13.8
10,001-30,000 people
10
34.5
30,001 – 50,000 people
1
3.4
50,001 – 10,000 people
4
13.8
>100,000 people
7
24.1
The majority of participants (69% or 20) reported that they were single and had
never been married. Twenty (69%) participants reported that they lived with their parents
46
or other family member. Ten (34%) participants reported living in a town with a
population of 30,001-50,000 people.
Table 6. Camp Attendance, Cancer Type, Treatment, and Support Group Attendance of
the Sample
Response
Number % of total
of Cases Sample
Reported
Camp Attendance
Yes
17
58.6
No
12
41.4
Times at Camp (if responded yes to Camp
Attendance) *
Only once
8
47.1
More than once
11
64.7
Type of Cancer
Leukemia
6
20.7
Lymphoma
6
20.7
Brain Tumor
5
Osteosarcoma
6
Other
6
Age at Diagnosis**
15 years of age or <
12
16 years of age or >
16
Currently In Treatment
Yes
7
No
22
Currently Attending a Support Group
Yes
5
No
24
* 10 participants did not indicate if they had attended a camp.
** 1 participant did not indicate age at diagnosis.
17.2
20.7
20.7
41
55.1
24.1
75.9
17.2
82.8
Of the participants responding 41.4% (12) had never attended camp before. The
most commonly reported cancer diagnoses were leukemia (20.7% or 6), lymphoma
(20.7% or 6), osteosarcoma (20.7% or 6), and other (20.7% or 6). Most participants
reported being diagnosed with cancer between the ages of 16 and 17 years of age and of
the sample 75.9% currently not receiving treatment. Of the participants responding only
47
17.2% (5) currently participate in a support group, all reported being in a cancer support
group.
Tests of Effects of Camp Experience on Social Support
Scores recorded on the MOS Social Support Survey were calculated to yield
means for both pretest data and posttest data. The means are reported in Table 6. The
means were compared using a paired t-test to determine differences between pretest and
posttest scores on the MOS Social Support Survey.
Table 7. Comparison of Pre-Test and Post-Test Means and Standard Deviations for MOS
Social Support Scores
Pre-Test Standard Post-Test Standard
Mean Deviation
Mean
Deviation
Overall Support Index
4.027
.642
4.18
.715
Emotional/Informational 3.84
Support
Affectionate Support
4.28
.855
4.09
.734
.817
4.33
1.04
Positive Social
Interaction
Tangible Support
4.09
.996
4.07
1.04
4.16
.851
4.41
.769
A comparison of the pre-test and post-test means as reported above shows an
increase in the means for overall support index, emotional/informational support,
affectionate support and tangible support. The mean for positive social interaction
showed as slight decrease. The reported pre-test means and post-test means on overall
support index, emotional/informational support, affectionate support, positive social
interaction, and tangible support were then used to compute a paired t-test score to test
for statistical significance these findings are reported in Table 8.
48
Table 8. t-Tests Comparing Pre-Test and Post-Test Data on MOS Social Support Survey
Paired Differences (n=28)
Mean
Std.
Std.
95% Confidence
Deviation Error
Interval of the
Pre-Test Post-Test
t
mean
Difference
Paired Comparison
Lower
Upper
Overall Support Index
P*
-.156
.572
.106
-.374
.061
-1.47
.153
Emotional/Informational -.246
Support
Affectionate Support
-.057
.889
.165
-.584
.093
-1.49
.148
.782
.145
-.355
.240
-.396
.695
Positive Social
Interaction
Tangible Support
.022
.584
.108
-.199
.245
.212
.834
-.241
.676
.126
-.499
.016
-1.92
.065
* Two-tailed p values, df=28
Calculated means for overall support index, emotional/informational support,
affectionate support, positive social interaction, and tangible support on pre-test and posttest were compared utilizing a paired t-test. Initial results yielded no significant
difference in pre-test and post-test means for overall support index and the subscales
including emotional/informational support, affectionate support, positive social
interaction, and tangible support. The possible scores for the subscales and overall
support index ranged from 1 to 5. As previously reported there was an observed increase
in the mean for overall support index, emotional/informational support, affectionate
support, and tangible support. These increases in mean did not result in statistically
significant differences. The investigators also wanted to explore possible effects of the
camp experience on a vulnerable sub-sample of camp attendees. Vulnerability is defined
as participants that had scores reported as a mean score in the lower 50th percentile and
completed both the pre-test and post-test. Table 9 reports these results.
49
Table 9. Comparison of Pre-Test and Post-Test Means and Standard Deviations for
Participants Reporting MOS Social Support Scores in Lower 50th Percentile
PreStandard Post-Test Standard
Test
Deviation
Mean
Deviation
Mean
Overall Support Index
3.433
.413
3.794
.838
Emotional/Informational 3.269
Support
Affectionate Support
3.564
.844
3.740
.839
.699
3.795
1.33
Positive Social
Interaction
Tangible Support
3.641
1.21
3.641
1.24
3.442
.701
4.078
.932
The results showed an overall increase in the means from pre-test to post-test for
the subscales including emotional/informational support, affectionate support, positive
social interaction, and tangible support as well as the overall support index. The mean
scores were used to calculate statistical significance using a paired t-test.
Table 10. t-Tests Comparing Pre-test and Post-test Data on MOS Social Support Survey
for Participants Reporting MOS Social Support Scores in Lower 50th Percentile
Paired Differences (n=13)
95% Confidence
Mean
Std.
Std.
Interval of the
Deviation Error
Pre-Test Post-Test
t
Difference
mean
Paired Comparison
Lower
Upper
Overall Support Index
-.360
P*
.753
.209
-.815
.095
-1.726
.110
Emotional/Informational -.471
Support
Affectionate Support
-.230
1.226
.340
-1.212
.270
-1.386
.191
1.117
.310
-.906
.444
-.745
.471
Positive Social
Interaction
Tangible Support
.000
.544
.151
-.328
.325
.000
1.00
-.635
.740
.205
-1.082
-.187
-3.091
.009
* Two-tailed p values, df=12
50
Scores from camp attendees in the lower 50th percentile were calculated to yield
means for overall support index, emotional/informational support, affectionate support,
positive social interaction, and tangible support on pre-test and post-test and were
compared utilizing a paired t-test. Statistically significant results were observed for the
subscale of tangible support with a calculated t score of -.3.091 and a p value of 0.009.
These results suggest attendance at camp had a positive effect on young adults
perceptions of received tangible support. Statistically significant results on comparison
of pre-test and post-test means for overall support index and the subscales including
emotional/informational support, affectionate support, and positive social interaction
were not observed. The possible scores for the subscales and overall support index
ranged from 1 to 5. As previously reported there was an observed increase in the mean
for overall support index, emotional/informational support, affectionate support, and
tangible support. There was no change in the mean for the subscale positive social
interaction. These increases in mean did not equate to statistically significant results
except for the subscale of tangible support.
The findings of this study showed no statistical significance for overall support
index, emotional/informational support, affectionate support, positive social interaction,
tangible support on initial examination of data. An observed increase in means was
demonstrated on comparison of means for overall support index, emotional/informational
support, affectionate support, and tangible support for pre-test and post-test scores. A
decrease was found in the pre-test and post-test means for positive social interaction.
Similar results were reported when the investigators explored the possible effects of the
camp experience on a vulnerable subpopulation of camp attendees with exception of
51
statistical significance in the sub scale tangible support. In this vulnerable subpopulation
there was no statistically significant change in pre-test and post-test means for overall
support index, emotional/informational support, affectionate support, and positive social
interaction. A statistically significant increase in mean was observed in the vulnerable
subpopulation for tangible support. These results suggest that attendance at camp had a
positive effect on camper’s perception of tangible support. Again an increase in means
was observed for overall support index, emotional/informational support, affectionate
support, and tangible support.
52
CHAPTER 5
DISCUSSION
In this small study there was no significant change in the overall social support
index, emotional/informational support, tangible support, positive social interaction
support, or affectionate support on the pre-test post-test paired t-test within a sample of
29 participants aged 18-25 attending a week long camp for young adults with a diagnosis
of cancer. When the data for an identified vulnerable population were compared there
was a statistically significant increase in the mean for the subscale tangible support. Of
note is the size of the vulnerable population, n-13. Finding a statistically significant
increase in pre-test to post-test means for the subscale of tangible support is an important
finding. It is unlikely that the observed increase in tangible support is due to an anomaly
in the population or the study. The is can be said with a degree of confidence due to the
fact that the mean change in pre-test to post-test means for the tangible support subscale
in the vulnerable population falls within the 95% confidence interval. The 95%
confidence interval does not contain the value 0 suggesting that the results of this finding
are due to treatment effect. Although statistically significant results were found only in
the tangible support subscale for the vulnerable sub-sample, an overall increase in the
observed means from pre-test to post-test was demonstrated. This trend was observed in
the means for all campers completing both the pre-test and post-test surveys as well as
the data set examining only those campers that scored in the lower 50th percentile of
social support on the pre-test. These results together with the testimonials of campers
53
about the value of the experience certainly suggest that further evaluation studies with a
larger sample would be very worthwhile.
Comparison of pre-test and post-test means showed an increase in overall social
support as well as each individual subscale with the exception of positive social
interaction which remained the same on both pre-test and post-test means. It seems likely
that the means on this subscale would increase after a camp experience however this was
not found in this study.
Comparison of the pre-test and post-test means showed in increase in the
emotional/informational support, tangible support, and affectionate support. Items on the
emotional/informational support subscale contained items addressing the presence of a
person or persons to talk and confide in that understand the individual experience. The
overall mean on this subscale increased in both evaluations of data. The initial
comparison of means showed an increase in pre-test post-test means in the overall
support index from 4.02 to 4.18, emotional/informational support from 3.84 to 4.09,
affectionate support from 4.28 to 4.33, and tangible support from 4.16 to 4.41. There was
an observed decrease in overall means for positive social interaction from 4.09 to 4.07.
In the exploratory analysis of an identified vulnerable population and increase in pre-test
post-test means was observed in the overall support index 3.433 to 3.794, in
emotional/informational support from 3.269 to 3.740, in affectionate support from 3.564
to 3.795, and in tangible support from 3.442 to 4.078. The increase observed for tangible
support was statistically significant. These results indicate that attendance at camp had a
positive influence in camper’s perception of received tangible support. There was no
observed change in pre-test post-test means in positive social interaction, the pre-test and
54
post-test means were reported as 3.64. These results were supported with qualitative data
collected on pre-test and post-test surveys for the overall support index as well as the
individual subscales. In terms of overall support one participant reported “My friends are
great to me, but most of them don’t and can’t understand what this experience has done
or why things are so different for me”. The same participant reported the following on
the post-test survey, “Friends from camp understand and have gone through similar
experiences”. Another camper reported a poor relationship with his family on the pre-test
survey noting “My dad and I don’t talk to each other. My mom doesn’t know how to be
affectionate towards me and my sisters have their own life”. The same camper noted that
fellow participants were better able to understand. In post-test data one camper reported
feeling that it was easier to share thoughts, feelings and concerns with friends made at
camp noting “people at home do not know exactly what cancer had done and been for
me”. In light of these testimonials from campers and the increase in pre-test and post-test
means it is likely that statistically significant results could be realized with a larger
sample size.
The emotional/informational support subscale measures the presence of a person
who is available to listen, give information, give advice, confide in, and help the person
through difficult situations. Family can be a strong source of this type of support as
noted by this camper, “My family is always there to listen. They each fulfill a special
need for me.” Peers can also fulfill this need, especially peers who have undergone
similar situations. In response to a question asking why the participant thinks they will
stay in touch with other participants, this camper answered, “Because everyone is so
very supportive. They listen with a caring ear.” Another camper noted “I got to meet
55
someone who understands exactly what I went through and am still going through as well
as someone who shared similar views on our future.”
The tangible support subscale measures the physical presence of person or
persons available for a ride to the doctor, activities of daily living assistance, and help
with chores. Many campers reported that their favorite part of camp was the ropes
course. The ropes course is a obstacle course suspended high above the ground. The
campers reported that the physical and emotional support provided by campers and staff
while they were doing the ropes course was like none they had ever experienced.
Another participant reported that their favorite part of camp was sitting down and talking
to everyone and hearing their stories. The reason that this was a favorite activity for this
participant was because it “let’s my feelings out – gives me perspective and motivation to
keep on fighting.” Attending camp provided the participants with an opportunity to meet
others in similar situations and form tangible connections, “We were challenged together
and accomplished it together which bonded us.”
The subscale of affectionate support measures the presence of person or persons
who show love and affection including physical contact in the form of hugs. Camp offers
the participants an opportunity to form connections with others going through a similar
experience. One camper reported “We create connections here that isn’t available
anywhere else”. Another camper noted that camp provided connections not easily found
in the “outside” world, “I come to camp to meet other young adults who understand my
situation and help me grow and heal”.
The sub scale of positive social interaction looked at having someone to have a
good time with, to get together with and relax, and someone to do something enjoyable
56
with. As previously reported there was no observed increase in the mean for this
subscale in either population. It is unclear why this has occurred, especially when the
qualitative data is taken into consideration. One camper reported “I enjoyed spending
time with the other campers as well as the outside activities planned like rafting, the play
etc.” In response to a question asking the campers what their favorite activity was, one
camper replied “Getting to hang out with other people.”
A popular and common theme that stands out in the testimonials of campers is the
idea of making connections with someone who understands the unique position and
experiences a person with cancer has. The following are just a few of the quotes shared
by campers that demonstrate the aforementioned phenomenon. As related by one
camper, “for a few people here I feel that I can share more than I’ve shared with anyone
ever. Not so say my friends at home aren’t amazing – but EMPATHY is a very powerful
connecting force!” The same camper responded to the question in regards to maintaining
contact with friends from camp “I have from the past 2 camps and I know these
friendships can withstand distance and whatever else may come in the way. Again, the
understanding and connections it is unique and you can’t get this from non-survivors.”
The next quote is from a camper that left the hospital against medical advice to attend
camp. This camper passed away shortly after returning from camp however her family
has expressed that attending camp one last time was the best thing for her. The camper
wrote on her survey the following, “A life shared is a life that is incredibly joyful to live.”
The testimonials provided by the campers overwhelmingly supported the benefits of
attending camp.
57
Study Limitations
It is important to note that a potential bias of this study is that individuals who
participated in the camp and in the study may be different from the general young adult
cancer population. A recommendation for further study would be the utilization of a
control group of young adults with cancer not attending camp.
Of concern in this study is the sample size. The results of this study did not show
statistical significance despite an increase in observed means was demonstrated on
comparison of pre-test and post-test scores. As previously mentioned these results are
likely attributed to the size of the sample population and lack of power. Repeating this
study with a larger sample size would be beneficial.
Finally it is difficult to determine the long terms effects of a camp experience on
social support after only two measurements. Follow-up at regular intervals after
attendance at camp would be beneficial in examination of the long-term effects of
attending camp on the participant’s perceptions of social support.
Future Research
As has been demonstrated in current and past literature, social support is a
powerful force influencing multiple facets of an individual’s life. Results from this study
are encouraging and suggest further study is warranted. Repeating this study with an
increase in sample size and utilization of a control group of young adults with cancer not
attending camp would be suggested.
There remain a great deal of unknown information on the exact mechanism of
action on how social support affects the physical and psychological well being of the
individual and the group. Also of interest are more studies on development of social
58
support networks and the effects associated with the absence of such a network. There is
a great deal of opportunity for further investigation in the realm of social support. The
possibilities are significant to understanding the human response and ability to cope.
Study Results and Previous Studies
As previously mentioned there are very few studies that have looked at the effects
of social support on young adults with cancer and the camp experience. A similar study
looked at social support, cancer, and camp in adults and found results consistent with the
results of this study. Yancey, Greger, & Coburn (1994) did not find significant increase
in reports of perceived social support in comparison of pre-camp and post-camp data,
they did find increases in mean scores for social support. The lack of significance was
attributed to not having a large enough sample size. Bluebond-Langner et al (1991)
reported that attendance at a pediatric oncology camp provided children and adolescents
with peer interactions with other with similar experience however these relationships
could not and did not replace interactions with healthy peers. These findings were based
on results from interviews with the children and adolescents and questionnaires mailed to
the their parents before and after camp.
Implications for Practice
The results of this study suggest that attendance at an oncology camp can provide
young adults with cancer a positive experience. Past and current literature has
demonstrated the benefits associated with the formation of a social support network for
both physical and mental health.
59
As a health care provider the nurse and the nurse practitioner are in a position to
facilitate and coordinate a camp experience for a young adult diagnosed with cancer. A
fundamental component of being a nurse is assessing, diagnosing, planning, and
implementing care that address the needs of the entire individual, not just medical needs.
The nurse and nurse practitioner can collaborate with other care providers and the patient
to encourage and implement attendance at an oncology camp. Through participation in a
camp experience the patient can establish social connections and networks with others in
similar experiences and with an understanding of cancer that only a survivor knows. This
notion of connection is a popular theme related by many campers, “The understanding
and connections it is unique and you can’t get this from non-survivors”. Facilitating this
opportunity provides an opportunity like none other to connect, relate, and possibly grow.
Conclusion
Current and past literature has repeatedly noted the benefits associated with social
support. These benefits extend the realms of well-being and health. It is difficult to deny
the formation of a social support network as being a positive and beneficial experience.
A need for further investigation of the effects of social interaction with others
experiencing the same or similar experiences is greatly needed. As previously mentioned
further studies would benefit from the use of a control group for comparison purposes.
The results from this study suggest that cancer camp may be an effective
intervention for establishing a social support network and possibly having a benefit on
overall health and well-being. The stress associated with the cancer experience cannot be
denied. Continuing to develop and test the effectiveness of the establishment of social
60
networks especially with person undergoing similar experiences is crucial to assist
individuals in coping with cancer.
61
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66
APPENDICES
67
APPENDIX A
RESEARCH TOOL
68
PRE-TEST RESEARCH TOOL
Young Adults with Cancer and the Camp Experience
Camp Mak-A-Dream
Young Adult Conference – Summer 2003
Place an “X” next to the answer that best answers each question or
statement.
1. How old were you on your last birthday? (Mark only one response.)
____18 years old
____19 years old
____20 years old
____21 years old
____22 years old
____23 years old
____24 years old
____25 years old
2. Sex: (Mark only one response.)
____Male
____Female
3. Which one of these groups would you say best represents your race? (Mark
only one response.)
____White
____Black or African American
____Hispanic
____Asian
____Native Hawaiian or Other Pacific Islander
____American Indian, Alaska Native
Other: (specify)__________
4. What is the highest grade or year of school you completed? (Mark only one
response.)
____Never attended school or only attended kindergarten
____Grades 1 through 8 (Elementary)
____Grades 9 through 11 (Some high school)
____Grade 12 or GED (High school graduate)
____College 1 year to 3 years (Some college or technical school)
____College 4 years or more (College graduate)
69
5. Are you currently: (Mark only one response.)
____Employed for wages
____Self-employed
____Out of work for more than 1 year
____Out of work for less than 1 year
____Homemaker
____Student
____Retired
____Unable to work
6. Which of the following categories best describes your annual household
income from all sources? (Mark only one response.)
____Less than $10,000
____$10,000 to less than $15,000
____$15,000 to less than $20,000
____$20,000 to less than $25,000
____$25,000 to less than $35,000
____$35,000 to less than $50,000
____$50,000 to $75,000
____Over $75,000
7. Are you: (marital status) (Mark only one response.)
____Married
____Divorced
____Widowed
____Separated
____Never married
____A member of an unmarried couple
8. Which best describes your living arrangement: (Mark only one response.)
____Live alone
____Live with spouse or significant other
____Have a roommate
____Live with parents or other family member
9. Which best describes the size of the city/town you are currently living in:
(Mark only one response.)
____Less than 5,000 people
____5,001-10,000 people
____10,001-30,000 people
____30,001-50,000 people
____50,001 – 100,000 people
____More than 100,000 people
70
10. Have you ever attended Camp Mak-A-Dream or any other camp for children
or young adults with cancer? (Mark only one response.)
____Yes – Go to question a.
____No – Skip question a.
a. How many times have you attended this or the other camp? (Mark only
one response.)
____Only once
____More than once
11. What kind of cancer do you have? (Mark all that apply.)
____Leukemia
____Lymphoma
____Brain Tumor
____Osteosarcoma
____Kidney Tumor
Other (please specify):______________
12. How old were you when you were diagnosed with cancer?__________
13. Are you currently in treatment for your cancer? (Mark only one response.)
____ Yes – Go to question a. and skip question b.
____ No – Skip question a. and go to question b.
a. What kind of treatment are you currently receiving? (Mark all that
apply.)
____Chemotherapy
____Radiation Therapy
b. If not, how long ago was your last treatment and what kind of treatment
was it? (Mark all that apply.)
____Months ______Years
____Chemotherapy
____Radiation Therapy
14. Are you currently in a support group? (Mark only one response.)
____Yes – Go to question a.
____No – Skip question a. and go to question #15.
a. What kind of support group to you participate in?
____ Cancer support group.
____ Other support group not dealing with cancer.
71
Please read each statement and mark the response that is appropriate for you. Mark only one
response. There are no right or wrong answers.
15. In general, would you say your health is:
____Excellent
____Very Good
____Good
____Fair
____Poor
16. Compared to one year ago, how would you rate your health in general now?
____Much better now than one year ago
____Somewhat better now than one year ago
____About the same
____Somewhat worse now than one year ago
____Much worse now than one year ago
The following items are about activities you might do during a typical day. Does your
health now limit you in these activities? If so, how much? (Circle One Number on Each
Line)
Yes,
Limited a
Lot
Yes,
Limited
a Little
No,
Not
limited
at All
17. Vigorous activities, such as running, lifting heavy
objects, participating in strenuous sports.
[1]
[2]
[3]
18. Moderate activities, such as moving a table, pushing a
vacuum cleaner, bowling, or playing golf
[1]
[2]
[3]
19. Lifting or carrying groceries
[1]
[2]
[3]
20. Climbing several flights of stairs
[1]
[2]
[3]
21. Climbing one flight of stairs
[1]
[2]
[3]
22. Bending, kneeling, or stooping
[1]
[2]
[3]
23. Walking more than a mile
[1]
[2]
[3]
24. Walking one block
[1]
[2]
[3]
25. Bathing or dressing yourself
[1]
[2]
[3]
72
During the past 4 weeks, have you had any of the following problems with your work or
other regular daily activities as a result of your physical health? (Circle One Number
on Each Line)
Yes
No
26. Cut down the amount of time you spent on work or other activities
1
2
27. Accomplished less than you would like
1
2
28. Were limited in the kind of work or other activities
1
2
29. Had difficulty performing the work or other activities (for example, it
took extra effort)
1
2
During the past 4 weeks, have you had any of the following problems with
your work or other regular daily activities as a result of any emotional
problems (such as feeling depressed or anxious)? (Circle One Number on
Each Line)
Yes
No
30. Cut down the amount of time you spent on work or other activities
1
2
31. Accomplished less than you would like
1
2
32. Didn't do work or other activities as carefully as usual
1
2
33. During the past 4 weeks, how much of the time has your physical health or
emotional problems interfered with your social activities (like visiting with friends,
relatives, etc.)? (Mark only one response.)
____All of the Time
____Most of the Time
____Some of Time
____A Little of the Time
____None of the Time
73
34. During the past 4 weeks, how much did pain interfere with your normal work
(including both work outside the home and housework)? (Mark only one
response.)
____Not at all
____A little bit
____Moderately
____Quite a bit
____Extremely
35. During the past 4 weeks, to what extent has your physical health or emotional
problems interfered with your normal social activities with family, friends,
neighbors, or groups? (Mark only one response.)
____Not at all
____Slightly
____Moderately
____Quite a bit
____Extremely
These questions are about how you feel and how things have been with
you during the past 4 weeks. For each question, please give the one
answer that comes closest to the way you have been feeling. How much
of the time during the past 4 weeks . . . (Circle One Number on Each
Line)
All
of
the
Time
Most
of
the
Time
A
Good
Bit of
the
Time
36. Did you feel full of pep?
1
2
37. Have you been a very nervous
person?
1
38. Have you felt so down in the
dumps that nothing could cheer
you up?
1
Some
of the
Time
A
Little
of
the
Time
None
of
the
Time
3
4
5
6
2
3
4
5
6
2
3
4
5
6
74
All
of
the
Time
Most
of
the
Time
A
Good
Bit of
the
Time
Some
of the
Time
A
Little
of
the
Time
None
of
the
Time
39. Did you have a lot of energy?
1
2
3
4
5
6
40. Have you felt downhearted and
blue?
1
2
3
4
5
6
41. Did you feel worn out?
1
2
3
4
5
6
42. Have you been a happy
person?
1
2
3
4
5
6
43. Did you feel tired?
1
2
3
4
5
6
44. How much bodily pain have you had during the past 4 weeks? (Mark only one
response.)
____None
____Very mild
____Mild
____Moderate
____Severe
____Very severe
How TRUE or FALSE is each of the following statements for you. (Circle
One Number on Each Line)
Definitely
True
Mostly
True
Don't
Know
Mostly
False
Definitely
False
45. I seem to get sick a little
easier than other people.
1
2
3
>4
5
46. I am as healthy as anybody I
know.
1
2
3
4
5
47. I expect my health to get
worse.
1
2
3
4
5
75
People sometimes look to others for companionship, assistance, or other
types of support. How often is each of the following kinds of support
available to you if you need it? (Circle One Number on Each Line)
None of
the time
A little
of the
time
Some Most of All of
of the
the
the
time
time
time
48. Someone to give you good advice about a
crisis.
1
2
3
4
5
49. Someone to give you information to help
you understand a situation.
1
2
3
4
5
50. Someone you can count on to listen to you
when you need to talk.
1
2
3
4
5
51. Someone to confide in or talk to about
yourself or your problems.
1
2
3
4
5
52. Some whose advice you really want.
1
2
3
4
5
53. Someone who hugs you.
1
2
3
4
5
54. Someone to turn to for suggestions about
how to deal with a personal problem.
1
2
3
4
5
55. Someone to do things with to help you get
your mind off things.
1
2
3
4
5
56. Someone to help you if you were confined to
bed.
1
2
3
4
5
57. Someone to take you to the doctor if you
needed it.
1
2
3
4
5
58. Someone to prepare your meals if you were
unable to do it yourself.
1
2
3
4
5
59. Someone to help with daily chores if you
were sick.
1
2
3
4
5
60. Someone who shows you love and affection.
1
2
3
4
5
61. Someone to love you and make you feel
wanted.
1
2
3
4
5
62. Someone to share your most private worries
and fears with.
1
2
3
4
5
63. Someone to have a good time with.
1
2
3
4
5
64. Someone to get together with for relaxation.
1
2
3
4
5
65. Someone to do something enjoyable with.
1
2
3
4
5
66. Someone who understands your problems.
1
2
3
4
5
76
Pre-Test Qualitative Questions
67. How would you rate your current relationship with your family?
____Excellent
____Very Good
____Good
____Fair
____Poor
Briefly explain why you would rate your relationship with your family this way.
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
68. How would you rate your current relationship with your friends?
____Excellent
____Very Good
____Good
____Fair
____Poor
Briefly explain why you would rate your relationship with your friends this way.
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
69. What factors influenced your decision to attend camp?
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
POST-TEST RESEARCH TOOL
Young Adults with Cancer and the Camp Experience
Camp Mak-A-Dream
Young Adult Conference – Summer 2003
Please read each statement and mark the response that is appropriate for you. Mark only
one response. There are no right or wrong answers.
15. In general, would you say your health is:
____Excellent
____Very Good
____Good
____Fair
____Poor
77
16. Compared to one year ago, how would you rate your health in general now?
____Much better now than one year ago
____Somewhat better now than one year ago
____About the same
____Somewhat worse now than one year ago
____Much worse now than one year ago
The following items are about activities you might do during a typical
day. Does your health now limit you in these activities? If so, how
much? (Circle One Number on Each Line)
Yes,
Limited
a Lot
Yes,
Limited
a Little
No,
Not
limited
at All
17. Vigorous activities, such as running, lifting heavy
objects, participating in strenuous sports.
[1]
[2]
[3]
18. Moderate activities, such as moving a table, pushing a
vacuum cleaner, bowling, or playing golf
[1]
[2]
[3]
19. Lifting or carrying groceries
[1]
[2]
[3]
20. Climbing several flights of stairs
[1]
[2]
[3]
21. Climbing one flight of stairs
[1]
[2]
[3]
22. Bending, kneeling, or stooping
[1]
[2]
[3]
23. Walking more than a mile
[1]
[2]
[3]
24. Walking one block
[1]
[2]
[3]
25. Bathing or dressing yourself
[1]
[2]
[3]
78
During the past 4 weeks, have you had any of the following problems with
your work or other regular daily activities as a result of your physical
health? (Circle One Number on Each Line)
Yes
No
26. Cut down the amount of time you spent on work or other activities
1
2
27. Accomplished less than you would like
1
2
28. Were limited in the kind of work or other activities
1
2
29. Had difficulty performing the work or other activities (for example, it
took extra effort)
1
2
During the past 4 weeks, have you had any of the following problems with
your work or other regular daily activities as a result of any emotional
problems (such as feeling depressed or anxious)? (Circle One Number on
Each Line)
Yes
No
30. Cut down the amount of time you spent on work or other activities
1
2
31. Accomplished less than you would like
1
2
32. Didn't do work or other activities as carefully as usual
1
2
32. During the past 4 weeks, how much of the time has your physical health or
emotional problems interfered with your social activities (like visiting with
friends, relatives, etc.)? (Mark only one response.)
____All of the Time
____Most of the Time
____Some of Time
____A Little of the Time
____None of the Time
79
17. During the past 4 weeks, how much did pain interfere with your normal work
(including both work outside the home and housework)? (Mark only one
response.)
____Not at all
____A little bit
____Moderately
____Quite a bit
____Extremely
18. During the past 4 weeks, to what extent has your physical health or emotional
problems interfered with your normal social activities with family, friends,
neighbors, or groups? (Mark only one response.)
____Not at all
____Slightly
____Moderately
____Quite a bit
____Extremely
These questions are about how you feel and how things have been with
you during the past 4 weeks. For each question, please give the one
answer that comes closest to the way you have been feeling. How much
of the time during the past 4 weeks . . . (Circle One Number on Each
Line)
All
of
the
Time
Most
of
the
Time
A
Good
Bit of
the
Time
36. Did you feel full of pep?
1
2
37. Have you been a very nervous
person?
1
38. Have you felt so down in the
dumps that nothing could cheer
you up?
1
Some
of the
Time
A
Little
of
the
Time
None
of
the
Time
3
4
5
6
2
3
4
5
6
2
3
4
5
6
80
All
of
the
Time
Most
of
the
Time
A
Good
Bit of
the
Time
Some
of the
Time
A
Little
of
the
Time
None
of
the
Time
39. Did you have a lot of energy?
1
2
3
4
5
6
40. Have you felt downhearted and
blue?
1
2
3
4
5
6
41. Did you feel worn out?
1
2
3
4
5
6
42. Have you been a happy
person?
1
2
3
4
5
6
43. Did you feel tired?
1
2
3
4
5
6
45. How much bodily pain have you had during the past 4 weeks? (Mark only one
response.)
____None
____Very mild
____Mild
____Moderate
____Severe
____Very severe
How TRUE or FALSE is each of the following statements for you. (Circle
One Number on Each Line)
Definitely
True
Mostly
True
Don't
Know
Mostly
False
Definitely
False
45. I seem to get sick a little
easier than other people.
1
2
3
>4
5
46. I am as healthy as anybody I
know.
1
2
3
4
5
47. I expect my health to get
worse.
1
2
3
4
5
81
People sometimes look to others for companionship, assistance, or other
types of support. How often is each of the following kinds of support
available to you if you need it? (Circle One Number on Each Line)
None of
the time
A little
of the
time
Some Most of All of
of the
the
the
time
time
time
48. Someone to give you good advice about a
crisis.
1
2
3
4
5
49. Someone to give you information to help
you understand a situation.
1
2
3
4
5
50. Someone you can count on to listen to you
when you need to talk.
1
2
3
4
5
51. Someone to confide in or talk to about
yourself or your problems.
1
2
3
4
5
52. Some whose advice you really want.
1
2
3
4
5
53. Someone who hugs you.
1
2
3
4
5
54. Someone to turn to for suggestions about
how to deal with a personal problem.
1
2
3
4
5
55. Someone to do things with to help you get
your mind off things.
1
2
3
4
5
56. Someone to help you if you were confined to
bed.
1
2
3
4
5
57. Someone to take you to the doctor if you
needed it.
1
2
3
4
5
58. Someone to prepare your meals if you were
unable to do it yourself.
1
2
3
4
5
59. Someone to help with daily chores if you
were sick.
1
2
3
4
5
60. Someone who shows you love and affection.
1
2
3
4
5
61. Someone to love you and make you feel
wanted.
1
2
3
4
5
62. Someone to share your most private worries
and fears with.
1
2
3
4
5
63. Someone to have a good time with.
1
2
3
4
5
64. Someone to get together with for relaxation.
1
2
3
4
5
65. Someone to do something enjoyable with.
1
2
3
4
5
66. Someone who understands your problems.
1
2
3
4
5
82
Post-Test Qualitative Questions
67. How would you rate your overall camp experience?
____Excellent
____Very Good
____Good
____Fair
____Poor
Briefly explain why you would rate your camp experience this way.
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
68. What did you enjoy the most while at camp?
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
Briefly explain why you enjoyed this particular aspect of camp.
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
69. Do you think you will in the future attend camp again?
___Yes
___No
___Maybe
___Not sure
Briefly explain why you have chosen the above answer.
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
70. Do you think you will maintain contact with people you have met at camp?
___Yes
___No
___Maybe
___Not sure
Briefly explain why you have chosen the above answer.
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
83
71. Do you feel that you can openly share thoughts, feelings, and concerns with the
friend(s) you have met at camp?
___Yes
___No
___Maybe
___Not sure
Briefly explain why you have chosen the above answer.
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
72. Do you feel more or less able to share your thoughts, feelings, and concerns with
the friend(s) you have made at camp versus the friends you have at home?
____More Able to Share
____Less Able to Share
____About the Same
____Not Sure
Briefly explain why you have chosen the above answer.
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
84
APPENDIX B
INFORMED CONSENT
85
INFORMED CONSENT
SUBJECT CONSENT FORM FOR PARTICIPATION IN HUMAN RESEARCH AT
MONTANA STATE UNIVERSITY
Project Title: Young Adults with Cancer and a Camp Experience
Purpose
You are being asked to participate in a study examining some of your experiences as they
relate to a camp experience. This may help us better understand how a camp experience
may impact a person.
Procedure
You have been chosen to participate in this study because you are attending camp. If you
agree to participate you will be given a questionnaire related to health and the camp
experience. In addition to the questionnaire you will be asked to answer some questions
about your personal background. This process will take approximately 20 minutes to
complete. You will be asked to fill out the same questionnaire at the end of your camp
experience.
Risks
Answering the questions may cause you to think about your feelings and could make you
feel sad or upset. If you start to feel sad or upset please stop answering the questions and
immediately contact the person from which you received the questionnaire. They will
refer you to either Stuart J. Kaplan, M.D., the medical director at Camp Mak-A-Dream,
or Kristie Scheel, the Camp Mak-A-Dream camp director.
Benefits
The potential benefit for you and/or others is a possible increase in the understanding of
how a camp experience impacts a person, especially persons dealing with a chronic
illness.
Participation
If you do not wish to participate in the study you can tell the person who gave you the
questionnaire that you do not wish to be involved. You may also continue to answer the
questionnaire, however DO NOT sign the consent form if you do not want your data to
be included in the study. There is no associated cost to you to participate. If you have
any questions at this time please notify the person who gave you the questionnaire.
Confidentiality
If you choose to participate in this study your identity will be kept confidential. The
investigator will treat your identity with professional standards of confidentiality. The
information obtained in this study may be published in a nursing journal, but your
identity will not be revealed.
86
Authorization to Share Personal Health Information in Research
We are asking you to take part in the research described. To do this research, we will be
collecting health information that may identify you. For you to be in this research, we
need your permission to collect and share this information.
Additional questions about the rights of human subjects can be answered by the
Chairman of the Human Subjects Committee at Montana State University – Bozeman,
Mark Quinn, (406) 994-5721.
AUTHORIZATION: I have read the above and understand the purpose, procedure, risks,
and benefits of this study. I, _____________________________ (please print your
name), agree to participate in this research. I understand that I may later refuse to
participate, and that I may withdraw from the study at any time.
Signed: _________________________________________________
Witness: _________________________________________________
87
APPENDIX C
IRB AND CAMP MAK-A-DREAM APPROVAL
88
IRB AND CAMP MAK-A-DREAM APPROVAL
89
90
APPENDIX D
PRESENT MODELS OF SOCIAL SUPPORT
91
PRESENT MODELS OF SOCIAL SUPPORT
(a) Provider-recipient model: One provider meets all the needs of the recipient. (b)
Primary-secondary provider model: secondary provider assists primary provider in
meeting the needs of the recipient. (c) Multiple provider model: more than one provider
involved in meeting the needs of the recipient.
Adapted from: Hupcey, J. E. (1998). Clarifying the social support theory-research
linkage. Journal of Advanced Nursing, 27, 1231-1241.
92
APPENDIX E
PROPOSED MODELS OF SOCIAL INTERACTIONS
93
PROPOSED MODELS OF SOCIAL INTERACTIONS
(a) Direct reciprocation model: recipient provides direct reciprocal acts towards the provider.
(b) Delayed reciprocation model: recipient reciprocates at a later time or because of pat
relationship with the provider does not need to reciprocate. (c) Secondary reciprocation model:
recipient reciprocates to a second person in need of support. (d) Non-reciprocal recipient model:
recipient receiving more support than is reciprocated. (e) Non-reciprocal provider model:
recipient providing more support than received. (f) Stressful interaction model: Interaction
between the provider and recipient is stressful, even though behaviors may be intended to be
supportive. (g) Negative provider support model: support provide is negative, perceived as
negative, or the outcome is negative.
Adapted from: Hupcey, J. E. (1998). Clarifying the social support theory-research linkage.
Journal of Advanced Nursing, 27, 1231-1241.